Hospital care for people with terminal illnesses must improve

by Dr Jane Collins Chief Executive Marie Curie Chief Executive Jane Collins

In spite of a trend towards dying at home, hospital is where we are most likely to end our lives.  This is not what terminally ill people and their families would wish for if adequate care was available in the community.
Of course, Marie Curie and the NHS share a commitment to reducing the number of people dying in hospital and increasing the availability of community services to help people die where they normally live, or in a hospice. However, we must acknowledge that hospital will always be a place where people die, often because that is the place that is most appropriate for their needs. For this reason, we need to ensure that our NHS hospitals are able to offer the very highest level of care to terminally ill and dying people, and support to those close to them.

New report published

We have a long way to go in that area. According to National Care of the Dying Audit for Hospitals, England report  , led by the Royal College of Physicians in collaboration with the Marie Curie Palliative Care Institute Liverpool (MCPCIL), and funded by Marie Curie and Public Health England, and published today (15 May):

  • Only 21% of NHS hospital trusts have access to face-to-face palliative care services, seven days a week, despite a longstanding national recommendation that this be provided. Only 2% of trusts offer a 24/7 face-to-face service.

  • Only 56% of trusts have conducted a formal audit of the care they provide for dying people.

  • Only 47% have a formal process in place to capture the views of bereaved relatives or friends about the care their loved one received.

  • Only 53% have a named board member with responsibility for care of the dying.

  • Training in end of life care is mandatory for doctors in only 19% of trusts and in 28% for nurses.

For the first time the report also includes the views of over 800 bereaved relatives and friends. This provides further insights into relatives' own views about how well hospital staff respond to the physical, emotional and spiritual needs of people in their final days of life, and of their families, carers and those close to them. The results tell us that hospital staff need to do more to involve and support families at this emotional time.

  • 24% of those who completed the survey did not feel they were involved in decisions at all about care and treatment of their family member.

  • 37% reported that the overall level of emotional support given to them by the healthcare team was only fair or poor.

  • Overall, 76% felt adequately supported during the dying person’s last two days of life; but 24% did not.

In a way, none of this is a surprise. It echoes the findings of the Neuberger Review of the Liverpool Care Pathway last July and the annual National Survey of Bereaved People, which found that in England people who die in hospital tend to receive poorer quality care than those who die in hospices, care homes or their own homes. What this report does is give us the ‘why’ behind the lack of improvement in the quality of care for terminally ill and dying people in hospitals. It paints a picture of pockets of excellence, but shows in particular that terminally ill and dying people face lack of access to care outside of office hours and that training in end of life care for doctors and nurses is only occasionally mandatory. The report also shows that feedback mechanisms to help improve the quality of care are still missing in a large number of NHS Trusts.

Improved care

Dying is, of course, not something that happens in ‘office hours’. It might seem crude to say, but what this report shows is that NHS hospital trusts are not yet adapting to the fact that care for terminally ill and dying people is often urgent and can be required any time of the day or night. We at Marie Curie are very pleased to endorse the recommendations the report has made, in particular that hospital specialist palliative care teams should offer a face-to-face service seven days a week, 9am-5pm, as a bare minimum; and that education and training should be mandatory for all staff who care for dying people. More often than not this care is carried out by generalist doctors and nurses rather than specialist palliative care consultants, and so many generalists have been, to date, untrained and unsupported in how to care for their dying patients. Of course, the recommendations are clear and consistent with what has been said before. The important thing now is that everyone involved takes the decisive action needed to improve quality of care. The audit is an incredibly powerful tool for measuring performance and holding NHS hospital trusts to account for how they care for terminally ill and dying people, which is, of course, a concern for all of us.

We know that hospitals will remain an important place to care for dying people who want and need to be there.  We hope this audit continues to drive up standards of care and ensures that those at the end of life, and their families, get the care and support they need and deserve.

As the major funder of the audit, we are now calling on NHS Improving Quality, who are responsible for driving up improvements across the NHS in England, to secure continued funding for this important work.